We're unable to sign you in at this time. Please try again in a few minutes.
We were able to sign you in, but your subscription(s) could not be found. Please try again in a few minutes.
There may be a problem with your account. Please contact the AMA Service Center to resolve this issue.
Contact the AMA Service Center:
Telephone: 1 (800) 262-2350 or 1 (312) 670-7827  *   Email: subscriptions@jamanetwork.com
Error Message ......
Original Investigation |

Public Preferences About Secondary Uses of Electronic Health Information

David Grande, MD, MPA1,2; Nandita Mitra, PhD3; Anand Shah, MD, MSHP4; Fei Wan, MS3; David A. Asch, MD, MBA1,2,5
[+] Author Affiliations
1Division of General Internal Medicine, Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia
2Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia
3Department of Biostatistics and Epidemiology, University of Pennsylvania Perelman School of Medicine, Philadelphia
4Division of Emergency Medicine, University of Texas Southwestern Medical Center, Dallas
5Center for Health Equity Research and Promotion, Philadelphia VA Medical Center, Philadelphia, Pennsylvania
JAMA Intern Med. 2013;173(19):1798-1806. doi:10.1001/jamainternmed.2013.9166.
Text Size: A A A
Published online

Importance  As health information technology grows, secondary uses of personal health information offer promise in advancing research, public health, and health care. Public perceptions about sharing personal health data are important for establishing and evaluating ethical and regulatory structures to oversee the use of these data.

Objective  To measure patient preferences about sharing their electronic health information for secondary purposes (other than their own health care).

Design, Setting, and Participants  In this conjoint analysis study, we surveyed 3336 adults (568 Hispanic, 500 non-Hispanic African American, and 2268 non-Hispanic white); participants were randomized to 6 of 18 scenarios describing secondary uses of electronic health information, constructed with 3 attributes: uses (research, quality improvement, or commercial marketing), users (university hospitals, commercial enterprises, or public health departments), and data sensitivity (whether it included genetic information about their own cancer risk). This design enabled participants to reveal their preferences for secondary uses of their personal health information.

Main Outcomes and Measures  Participants responded to each conjoint scenario by rating their willingness to share their electronic personal health information on a 1 to 10 scale (1 represents low willingness; 10, high willingness). Conjoint analysis yields importance weights reflecting the contribution of a dimension (use, user, or sensitivity) to willingness to share personal health information.

Results  The use of data was a more important factor in the conjoint analysis (importance weight, 64.3%) than the user (importance weight, 32.6%) and data sensitivity (importance weight, 3.1%). In unadjusted linear regression models, marketing uses (β = −1.55), quality improvement uses (β = −0.51), drug company users (β = −0.80), and public health department users (β = −0.52) were associated with less willingness to share health information than research uses and university hospital users (all P < .001). Hispanics and African Americans differentiated less than whites between uses.

Conclusions and Relevance  Participants cared most about the specific purpose for using their health information, although differences were smaller among racial and ethnic minorities. The user of the information was of secondary importance, and the sensitivity was not a significant factor. These preferences should be considered in policies governing secondary uses of health information.

Figures in this Article

Sign in

Create a free personal account to sign up for alerts, share articles, and more.

Purchase Options

• Buy this article
• Subscribe to the journal


Place holder to copy figure label and caption
Figure 1.
Effect of Health Information Sharing Attributes on Willingness to Share by Race

Six of the 18 conjoint scenarios are shown. In each, the sensitivity of the health information is held constant (“low”). The user, “public health department,” is not shown here. The interaction of race and ethnicity with the conjoint attributes is shown. Values represent changes in willingness to share health information rated on a 1 to 10 scale (where 1 indicates low and 10, high) and relative to the reference scenario (user, university hospital; use, research); they are combinations of β values.

Graphic Jump Location
Place holder to copy figure label and caption
Figure 2.
Confidence in Various Institutions and Organizations to Protect Health Information

Respondents were asked, “Next, we are going to name some institutions and organizations in the country. How much confidence do you have in them to protect your health information?” Their 3 response options are depicted.

Graphic Jump Location




Meets CME requirements for:
Browse CME for all U.S. States
Accreditation Information
The American Medical Association is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians. The AMA designates this journal-based CME activity for a maximum of 1 AMA PRA Category 1 CreditTM per course. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Physicians who complete the CME course and score at least 80% correct on the quiz are eligible for AMA PRA Category 1 CreditTM.
Note: You must get at least of the answers correct to pass this quiz.
You have not filled in all the answers to complete this quiz
The following questions were not answered:
Sorry, you have unsuccessfully completed this CME quiz with a score of
The following questions were not answered correctly:
Commitment to Change (optional):
Indicate what change(s) you will implement in your practice, if any, based on this CME course.
Your quiz results:
The filled radio buttons indicate your responses. The preferred responses are highlighted
For CME Course: A Proposed Model for Initial Assessment and Management of Acute Heart Failure Syndromes
Indicate what changes(s) you will implement in your practice, if any, based on this CME course.
Submit a Comment


Some tools below are only available to our subscribers or users with an online account.

Web of Science® Times Cited: 3

Sign in

Create a free personal account to sign up for alerts, share articles, and more.

Purchase Options

• Buy this article
• Subscribe to the journal

Related Content

Customize your page view by dragging & repositioning the boxes below.

See Also...
Articles Related By Topic
Related Collections
PubMed Articles